Saturday, February 22, 2020

Benefits denied?

We, a whatsapp group of Muscular Dystrophy patients sent letters to Ministry of Health and Family Welfare, to include Limb Girdle Muscular Dystrophy (LGMD) in the national policy of treating rarest diseases. And it was nice to receive back a letter from Ministry of Health and Family Welfare, and we tore open the envelope eagerly expecting a bit of positivity as replay, but it quite disappointing and their replay was a letter that you read below.


My father wrote the letter in English (he, the ret. govt. officer had dealt with many official letters) but they still want a letter in English or Hindi! I actually thought they couldn’t read my father’s handwriting and was thinking to send it again typed in ms-word. But I wasn’t the one received like this but everyone written to them received the same replay exactly except the name and address. I wonder how they could do this exactly to everyone without even taking a glance, but reading and writing our addresses correctly. Huh

Is this happens with every letter sent to centre government from Tamil Nadu? Or their mind-set is registered that any letter from Tamil Nadu will be only in Tamil.  Yep, I know that couldn’t be the right reason to complain but resenting everyone’s letter (without a valid reason) doesn’t make any sense. Though I understand that 100+ members of our whatsapp group (and many other groups of muscular dystrophy patients around India) sending letters to the ministry doesn’t make great changes but we tried to push a coin instead waiting for thing to happen on own or never.

The main reason to include the Muscular Dystrophy in the national policy of treating rarest diseases is to get some special benefits that were denied for this kind of multiple disabilities. Generally genetic diseases like these don’t cover under insurance but if it given the status of rarest disease; we could get a health insurance worth about 15 lakh if any medicines or treatment found in the future. I also applied for the UDID (Unique Disability Identity Card) card based on the existing disability certificate obtained from the state government.  Glad they didn’t made demand the disabled people to appear in person to register for the UDID card and they are content with the information’s available.

7 comments:

George said...

It's hard to understand the thinking of bureaucrats in any government. I hope your group can get them to listen to your plea.

Sandi said...

Oh no...I hope you get it worked out soon.

eileeninmd said...

Hello,

Any dealing with the government can be frustrating. I hope all goes well. Enjoy your day, wishing you a happy new week !

carol l mckenna said...

Doesn't seem to make any sense ~ hope this situation gets straightened out soon for all concerned.

Happy Moments to You,
A ShutterBug Explores,
aka (A Creative Harbor)

Tom said...

...bureaucrats seem to be the same all around the world.

Nancy Chan said...

Hope one day, the request will be taken into consideration by the authority.

ashok said...

This is the typical government mindset...they are concerned with selected ideologies and care least about development or other sensitive peoples issues. Very sad and disappointed to read your experience.